PattiL

Brye is on the same page as my daughter Chrissy. Zofran is the drug of choice and I don't know what she'd do without it!

Thanks everyone, we'll look into these sites!

Has anyone been able to purchase their cooling vest at a retail store, or are they all from online? I'd love to have Chrissy try one on b/f buying. I've tried calling sporting goods stores, medical supply places, etc. I've heard they're used by people with MS and many football players, mascots, characters at amusement parks--do they all purchase them online too? Just wondering.

Patti

Chrissy has had great luck with tilting her bed. I think it's been about one year since we tilted her bed (6")and the thing it helps the most with is her nausea in the morning.

It took her awhile to get used to it--maybe about 1-2 weeks, but it was well worth it. We bought bed risers from Target or Walmart, here's a link...of course, we only used two for the head of her bed.

http://www.target.com/Plastic-Bed-Risers-S...4-3566611-44295

Patti

Hi, I've sent you a private e-mail.

Hugs to you and your daughter.

Patti

Stace,

We've had the same problem. Dr. Grubb's office canceled Chrissy's appt. last August and said we have to wait for a call back or see Beverly. We started seeing Dr. Robert Shields at the Cleveland Clinic who we just love. Chrissy sees him every three months and for us it even more convenient than going to Toledo. He's very patient and knowledgeable like Dr. Grubb and he is head of the Autonomic Laboratory, Department of Neurology at Cleveland Clinic,

Here's some info on him.

http://my.clevelandclinic.org/staff_direct.../Staff_505.aspx

Hope this helps some.

Patti

Hi Melissa,

As Chrissy just said, if she's feeling better, we'll be stopping in to see you this week, lucky you! Hopefully YOU'LL be feeling better and won't be there!

Wishing you all the best and lots of (((((((())))))). Hope to see you soon!

Patti

Thank you so much for this link. Wouldn't it be great if all major cities would do a segment on POTS? I'm sending this to some of my relatives, the more info they have the better.

Patti

Wow, what fabulous results! How did you hear about it? After reading your post, am I understanding correctly that you're not on any medication right now? Why haven't any of the Dr.'s ever mentioned this? Can you find it in a drug store? I'm going to call Chrissy's Dr. and ask him what he thinks of it and whether it would be an option for her.

Thank you for the information, very interesting.

Patti

We're with Melissa on this one. Dr. Robert Shields at the CCF is wonderful. In fact, since Dr. Grubb hasn't been so available lately, we've been seeing Dr. Shields every three months. He'll take his time with you (similar to Dr. Grubb) and is very knowledgeable and understanding. Hopefully you won't have to wait too long to see him.

Patti

Hi,

Are you talking about going to the CC for a TTT or going to the Clinic to see a specialist?

If you can, check past postings on Fetnat Fouad-Tarazi, M.D. She does the TTT for patients, but isn't the greatest on follow-up care. Here's her web-site.

http://my.clevelandclinic.org/staff_direct.../Staff_637.aspx.

Chrissy see Dr. Robert Shields there, he's a neurologist and we love him. We were just there yesterday, he's very helpful, listens and doesn't rush you. I'm not sure how long of a wait it is to see him though.

I hope this is of some help to you.

Patti

This kind of stuff makes me absolutely crazy!! Chrissy received a ticket at her own college for the same thing. There were no spots in the student lot so she parked in a handicapped spot, with her handicap sticker and lo and behold the almighty rent a cop gave her a ticket. They're not worth the time or energy, but if cost weren't an issue, wouldn't it be nice to make a photocopy of EACH AND EVERY piece of medical information you have on yourself (MRI'S, CAT scans, lab work, etc.) and throw that at them! I'd love to see their faces! Although knowing the arrogance of most of these schools, it won't phase them. (I'm not too bitter, am I?!!!) Like I said they're not worth it, it just makes me so angry that you have to prove yourself to them.

Good luck with appealing---don't let them get to you and whatever you do DON'T PAY!!

Patti

I copied this from "Prohealth's" message board.

I searched our site and there was some talk about methylation back in Feb., but nothing since.

If anyone has the time to read this, do you care to decifer it?

REVERSING AUTONOMIC NERVOUS SYSTEM DYSFUNCTION BY POTENTIATING METHYLATION"

It basically explains that Autonomic dysfunction can be helped or even reversed by forcing the continuous process of methylation.

Here is the abstract - the article is long, so skim through if you like.

http://www.freepatentsonline.com/y2008/0045448.html

Patti

Sorry, I just saw the link on the Chit-Chat forum--We're listening now!

Patti

As I was searching Echinacea, I saw that a few of you have had trouble taking it and some of you have taken it w/o any problems. Is there a specific reason why it would bother someone with POTS? How about Vitamin C. We thought they might help kick start her immune system Anyway, seems like chrissy's POTS doesn't care for it much, or at least we're blaming it on that.

Chrissy just went to an allergist/immunologist again at the recommendation of her ENT Dr. He's so *&^%&*(( arrogant! Her ENT Doc suggested she get her immune system checked again since she's still having 'sinus infection symptoms' w/o having a sinus infection. We also mentioned Mast Cell Activation Disorder and he proceeded to tell us that he's never heard of it AND that it was pretty ridiculous that we even think that she has any type of mast cell disorder. He had the attitude of the 'how dare we question his knowledge'. Anyway, he ordered the blood test and 24 hr. urine test to pacify us and shut us up. My feeling was to just get the test results and go to another Doc at the Cleveland Clinic who specializes in Mast Cell. We see him at the end of September. Chrissy has many of the symptoms of the disorder, but of course, 'there's NO way she could have this', especially, since 'I've never heard of it!

ARGH

PATTI

Did anyone hear this broadcast? Anything good?

Well, I was assuming it would happen, but hoping it wouldn't. She got her denial letter in the mail yesterday. I really thought we had enough information, considering I gave them a 3 ring binder full (and quite organized I must say) full of tests, lab work, hospital visits, etc. Back to the drawing board. I wish I had known about the Disinissues site on Yahoo. But, at least for the appeal I'll have this information and hopefully she'll get approved the second time around!

They contacted all of Chrissy's doctors and received their information also. When everyone says to have a Dr. in 'your corner' just how much does that Dr. have to do? Extra info--what exactly? Do they call them, or is it just written information they would receive?

Patti

Mestinon was the latest thing he prescribed for Chrissy ( in Dec.), it really helped with her showers, heat tolerance, etc., BUT she started having some bad stomach problems--- diarrhea. It was one of those situations of, do I want to take a shower, but not be able to leave the house, or leave the house and not take a shower! It think she's going to try it again once she's done with her latest episode of symptoms from another med.

Patti

Morgan,

Hope you're feeling better soon. Take care of yourself and as Tearose said, don't be gone too long!

Patti

Melissa,

Please do let us know when you're in Cleveland again. If Chrissy's feeling up to it, and of course, if you are, we could come down there to visit. We're only about 40 minutes away. My youngest son Nick, is down at Case, so we could always hang out with him if you were running late with an appt. or something. We could meet in Little Italy, which is two minutes from the hospital. OK, I'm getting carried away...let us know when your next visit is and hopefully we can get together! Our appt. with Grubb isn't until August.

Talk to you soon.

Patti

Hi Christine,

Welcome Dino..

My daughter, also a Christine (she has POTS), and our family live about 5 minutes from you--we're in Painesville Twp. I can't believe it. My best friend just told me about her neighbor who has POTS and lives in Concord. I know there's another member on this site who's from Mentor. Maybe we could get a support group out here?

Chrissy has problems during her period the most and actually wants to talk to her GYN about DEPO. B/C pills just don't work for her--the nausea is unbearable.

Patti

Melissa, it's so nice to hear from you. How are you feeling? How's the family? When we see Grubb this summer we'll be sure to call you before hand to see if you'd like some company again.

I found another thermometer around the house and we took her temp by mouth and it's 98. Whew! It's still around 95.5 under her arm though, and it's been fluctuating between 92.8 and 95.5. I can't remember the last time I took their temp. by mouth! Isn't that ridiculous? I feel so stupid. My kids haven't gotten a fever in so long and Chrissy's is always low--anyway, Thank God it's normal. There's too many other things going on with her right now, she surely didn't need this. Any ideas on how to help her vertigo, Melissa? I have to call the ENT Dr. tomorrow to see if these flu symptoms and vertigo are related to the new meds. Here we go again....

Thanks to everyone for responding so quickly!

Patti

Thanks for your replies. First off, I think I'm going to toss the thermometer. It's one of those digital types. I'm going to go back to the old mercury standby and see if there's a difference.

Off to the store....I'll let you know the outcome.

Patti

I know this topic has been posted before--but, Chrissy's been feeling really crappy lately and now her temp. (armpit) has gone as low as 92.8. I don't know if the thermometer is wacko or what. Her normal temp. is around 96-97. She said she feels really warm on her entire body, except her feet (which are always cold). When I feel her head, she doesn't feel warm, or cold for that matter!! I can usually tell if one of the kids has a fever by touch. She has vertigo right now, burning eyes, diarrhea, and what the Dr. thinks is Vasomotor Rhinitis.

Any ideas on what the deal could be on this really low temp.?

Patti

Chrissy just got back from the ENT Dr. yesterday. He's the one who did her sinus surgery last year. We went to see him b/c she's been getting sinus infections more often again, even after the surgery. He said she didn't have a sinus infection. No redness, no swelling, etc. He said he's pretty sure she has Vasomotor Rhinitis, which is basically non-allergy rhinitis. He gave her some Veramyst and Allegra D to make sure it's not being caused by allergies. (She's been tested for allergies twice--nothing really significant) He mentioned that it's a problem with the nervous system.

Once we got home Chrissy started looking it up and found that it is 'an autonomic nervous system dysfunction'. It makes me sick to think of all the antibiotics she's been put on when other Dr.'s have thought she had a sinus infection. We're seeing her neurologist at the end of this month, it'll be interesting what his take is on this (relation to POTS).

Has anyone had anything similar? If so, what meds have you used that have worked?

Thanks,

Patti